Update on my dd's hearing loss

[WaterLily]

I recently posted that my 8 yo dd failed a hearing screening at the peds. office, followed by failed tests at an audiologist (showed mild conductive hearing loss). I was relieved that the actual hearing nerves are working fine and that it's just a problem with sound getting to those nerves. We wondered if it could be fluid in her ears and the audiologist said that could be the case, but the peds. office said it's not fluid b/c she had just looked in my dd's ears for her checkup and there was no fluid. So the ped sent us on to an otologist and we had that appt. this week.

 

So at the otologist appt., he looked in my dd's ears and then read the report from the audiologist and explained things to us. He seemed confident of what the issue is. He said it's not fluid but there is a problem with the 3 tiny bones in my dd's ears (obviously he went into a lot more detail). He said that there's no way to know exactly what the issue is until you get in there and look around.... So that means exploratory surgery with the intention of fixing whatever is going on with those bones. I asked about hearing aids and he said that is an option for us to consider but she would have that hassle for the rest of her life and most parents in our situation choose surgery. My dd even said she'd rather have surgery. So we don't have the appt. yet but it looks like we're headed for surgery.

 

He also said he'd like to get a scan beforehand in case she should need a prosthesis. So after the otologist we headed for an MRI! My dd was so wonderfully brave but it was still kind of rough... especially because it was with and without contrast. I'm hoping the otologist's office will call me and let me know what the MRI report says.

 

But wait, there's more lol! At the beginning of the otologist appt., I mentioned my dd's giant tonsils and how I wondered if they contributed to her hearing loss. He said it's unrelated, BUT when he took a peek at her tonsils, he said "Whoah!" He described them as "trophy size" lol! He said we should really look at having them taken out b/c if she should ever get an infection that causes her tonsils to swell it could be dangerous. Soooo, now we have an appt. with an ENT and it's likely she'll be having her tonsils out!

 

It was quite an overwhelming day! One encouraging thing is that I'm hoping that once we get her hearing fixed it could help with her learning issues- specifically reading. She's been struggling with that and the otologist said that everything sounds muffled to her so it's likely that it's causing, or at least contributing to, her learning difficulties.

 

So if anyone has experience with any of this, I'd love your input!

[amo_mea_filiis.]

Can you do the ears and tonsils in the same surgery?

 

No advice or btdt. :grouphug:

[Dory]

:grouphug:

Sometimes it's nice to know what's going on, but it's still tough to work through it all. Hope the surgeries go well.

[WaterLily]

Thanks for the hugs. :)

No. He said the surgeries would need to be done separately... but I don't remember exactly why. I think it would just be too much for her at once. And I think they'll be done by 2 different drs. anyway.

Yes, getting answers is definitely a good thing!

[Jean in Newcastle]

I'm glad that you are getting the answers you need.

[Brindee]

What about her adenoids? My son had "trophy-sized" adenoids that blocked him from hearing (he flat-lined the hearing test and was starting to read lips at 3 years old) and he had constant ear infections. He also had major fluid build-up, as there was no room for it to drain. He had his adenoids removed and tubes in the ears, and he's been fine since. I know you said there was no fluid, but I was just curious about the adenoids.

Edited June 29, 2012 by Brindee

[WaterLily]

Yes, he said her adenoids are probably very large also. He still doesn't think that's related to the hearing loss. She doesn't have chronic ear infections and no fluid in the ears. When we go to the ENT we'll find out more about the tonsils and adenoids, but the otologist didn't think it was related to the hearing loss. He thinks it's a problem with the ear bones.

[Jean in Newcastle]

I would consider having the tonsil/adenoid surgery first. I have a friend who's daughter was diagnosed with autism and hearing loss until she had her very large adenoids taken out. She became a totally different girl! And the mom had to push for the surgery because the doctor really didn't think it was connected.

[WaterLily]

Yes, it seems like taking care of the tonsils first might be a good idea. I'm looking forward to asking the ENT his opinion on the possibility of her tonsils/adenoids affecting her hearing. I wish I understood why the otologist was so convinced that it's her ear bones. He may be right, but I just don't understand it. She doesn't seem to have a problem with fluid so maybe that precludes the eustachian tubes from being the problem... I've been doing some reading but I'm far from really understanding all this lol! I'm also anxious to find out what the MRI shows.

[PollyOR]

:grouphug: Glad you are getting some answers!

[zimom]

nm

[Parrothead]

I agree with the others. Do the tonsils/adenoids first. Be very selective about exploratory surgeries. Get a second and possibly even a third opinion just to be sure.

[VBCaroline]

Rebecca,

My oldest dd had exploratory surgery about 6 years ago, and we discovered that her hearing loss was caused by a fused stapes. About a year later, she had surgery to replace it with a prosthetic stapes, and her hearing improved quite a bit. She had a mild loss in one ear and a moderate loss in the ear with the fused stapes. Now her hearing loss is considered mild in both ears, and she does not wear hearing aids, although she does miss things when not focused or in noisy situations.

PM me if you want.:)

Caroline

[Amber in AUS]

Hopefully you will have some more answers soon. Sounds like our on the right track now.

[Harriet Vane]

Definitely deal with the adenoids/tonsils before considering exploratory surgery for the ear. I would re-assess the ears a couple months after the ENT stuff.

 

I would also get a second opinion before jumping into surgery.

[WaterLily]

zimom, thanks for your experienced opinion! I may send you a quick pm. The otologist didn't even bring up hearing aids. Maybe he would've, but I asked him if it was an option. He definitely seemed to think surgery would be preferable but said hearing aids would be an option for our family to discuss. My dd said she'd prefer surgery but of course she's 8 and we'll try to make the best decisions for her while taking her wishes into consideration.

 

Caroline, I may pm you as well! :) The issue that your dd had is one of the scenarios the dr. mentioned to me.

 

As everyone is recommending, I definitely think we'll try and take care of the tonsils first and then maybe get a second opinion on the ear surgery if it seems it may still be necessary.

 

Thank you all! You've been so encouraging and helpful!

[Jan in SC]

My son had hearing loss and there was no fluid in his ear, according to both the ped and the ENT. However, the ENT did a CT scan and he had chronic mastoiditis. He had a couple of weeks worth of antibiotics and was a different child. He was eight at the time and had five sets of tubes and chronic ear infections. He has never had trouble again.

 

I hope you find an easy fix!

[justLisa]

Wow your DD sounds like one brave dear :)

[QuirkyKidAcademy]

As someone who suffers from hearing loss, I'm so glad your DD's can be fixed! I'll be praying for complete recovery of her hearing.

[WaterLily]

I got the MRI report in the mail today. More medical jargon that I'm desperately trying to understand! lol! I was glad to see that they didn't find anything scary like tumors or anything. I'm going to put the relevant info and see if it makes sense to anyone...

 

FINDINGS: Seventh and eighth nerve complexes are intact. On T2 heavily water-weighted axial images, the apical turn of the cochlea is indistinct with a less prominent indentation between the superior and basilar turns. Vestibule is intact. No internal auditory canal or cerebellopontine angle masses or enhancement.

 

No scalar abnormality. No evidence of Mondini malformation. No evidence of endolymphatic sac dilation. No masses within the internal auditory canals.

 

Maxillary sinus mucosal thickening.

 

Then it says "no" to some other stuff too. At the end it says...

 

Conclusion:

1. Subtle lack of definition of the cochlea may represent a form of cochlear dysplasia. Finding is subtle and if feasible high-field examination or CT may provide further definition. No evidence of retrocochlear mass. No endolymphatic sac dilation.

 

So since I'm not a dr., I'm confused lol! Can cochlear dysplasia involve the ear bones? I thought the cochlea was the inner ear and the bones are in the middle ear? Also, the report says "may represent a form of cochlear dysplasia" and basically recommends another scan? So was this scan enough to say it IS cochlear dysplasia? I don't know. I'm anxiously waiting to hear from the otologist and hear what he has to say about the MRI report and I'll take all this info to the ENT next week too.

 

I know I'm getting very technical here but I just figured you never know if it might make sense to someone. :)

Edited July 3, 2012 by beccasboys

[Tammyla]

:grouphug::grouphug::grouphug:

[InterestingCase]

Did you omit the "No" before "evidence of Mondini malformation."

 

 

If not, I would research this because it sounds like it could lead to some issues with hearing.

[WaterLily]

Oops!!! Yes, there should be a "no" there. I went back and fixed it. Thanks! :)

[Tiramisu]

Bumping for you. :)

[Night Elf]

Wow, that is a lot to take in. So sorry you guys are going through all of that! Hopefully it all goes smoothly. :grouphug:

[WaterLily]

Thanks for the encouragement and for the bump! :)

 

Anyone else have any thoughts/experience? I'm hoping we'll find out more at the ENT appt. in a week.

 

Thanks!

[fhjmom]

The way I read that report is that the MRI was not clear enough to definitively say whether there was a malformation of the cochlea or not, which is why they are recommending a CT scan to see it in more detail. I wouldn't worry about it too much just yet. When we were going through all the diagnostic procedures with my girls, they did an MRI first for DD and then decided to do a CT because the MRI left some doubts. In our case the CT came back fine, but my DD still has a severe hearing loss; now we just know it isn't due to a malformed cochlea.

 

You are correct in that the cochlea is the inner ear and the bones are in the middle ear. Disorders affecting the bony structures result in conductive hearing loss are often treatable with surgery. Inner ear/cochlear issues are associated with sensorineural hearing loss (nerve realted hearing loss). If there is a problem with both, it can be a mixed loss with both a conductive and nerve component. Sometimes in the event of a mixed loss, they can successfully treat the conductive component but then they may recommend measures, such as hearing aids, to mitigate the effects of the sensorineural loss.

 

Hope that helps! Hugs and hang in there! I hope you are able to get some answers soon!

[WaterLily]

Thanks again for the continued advice and encouragement.

 

So we saw an ENT last week. He said that her tonsils are very large and even though he didn't look at them, her adenoids are likely large as well. Like the otologist, he does not think the hearing loss and the large tonsils/adenoids are related either. My dd has not had chronic ear infections (maybe 1 or 2 in the 4 1/2 years she's been home) or a problem with fluid in her ears and he said that they only way large tonsils/adenoids could cause (conductive) hearing loss if they are causing fluid. I specifically asked about if they are pressing on the auditory/eustachian tube but he said no- only if fluid, etc.

 

He asked about the snoring and apnea and I said yes snoring but I haven't noticed apnea. He is still concerned about her sleep and even said it could be causing or contributing to her learning issues. He said they don't take out tonsils/adenoids if they aren't causing any problems - even if they are very large. He said they aren't taken out as a preventative measure and that makes sense to me. Soooo, he wants to do a sleep study. If the sleep study is normal, we leave the tonsils/adenoids alone and move on to dealing with the ears (with the otologist). If the sleep study is abnormal we may take out the tonsils/adenoids, then move on to the ears. (And if the sleep study is normal then it's likely that the ears/hearing loss could be the cause of her learning issues.)

 

Sooo, that's where we are now...